Roly Megaw is an academic ophthalmologist with a clinical and research interest in the inherited retinal dystrophies (IRDs), a group of untreatable, monogenic conditions that are the leading cause of visual loss in children and working adults. 

Audrey Hughes is the Patient Involvement and Engagement Office for the Polycystic Kidney Disease (PKD) Charity UK and helps ensure that patients and the public are represented in research.

Fiona is a patient advocate for Rare Diseases who was awarded a British Empire Medal for chairing the PCD Support Group and raising awareness of PCD in the 2021 New Year’s Honours and an Honorary Doctorate from the Open University in 2025. 

Kerry has lived experience as her son is diagnosed with AS which is an ultra-rare and complex condition. She is a patient representative on the England Rare Diseases Framework Delivery Group and is co-applicant on various NIHR funded research studies.

I am an operations manager with experience in team management, contract management, publications development and editing, bid writing, service and strategy development and events.